The notion of ‘health’ and ‘wellbeing’ are often reduced to sets of numbers in reports that draw on healthcare data. These statistics are essential for monitoring and assessing the performance of a health service, but they do not typically acknowledge and address patients’ wellbeing needs or reflect different perspectives and worldviews.
Patient-reported outcome measures (PROMs) are quality-of-life (QOL) tools, usually in the form of questionnaires. They are routinely used by health services to capture consumers’ perceptions of their own health and wellbeing. Responses to PROMs are used to provide insights into patient experiences that complement information from clinical measures and enhance clinical–patient interactions. The uptake of PROMs to inform patient, clinical and policy decision-making is increasing, yet current approaches are inadequate for Aboriginal and Torres Strait Islander groups, whose healthcare experiences are impacted by the discordance between Indigenous conceptualisations of health and the Western biomedical health system.
Although the understanding of health varies among cultural groups and individuals, for many Aboriginal and Torres Strait Islander people, good health is more than the absence of illness or disease. It is multifaceted and involves the interconnectedness of major themes such as: identity, cultural continuity, connection to Country, family, spirituality, ancestry and kinship networks, as well as strong community governance and self-determination. It also has a political facet – placing health within a particular context where Aboriginal and Torres Strait Islander history, politics and social standing are essential to an understanding of wellbeing.
The What Matters 2 Adults (WM2A) tool is a new strengths-based wellbeing measure for Aboriginal and Torres Strait Islander adults, underpinned by their values, experiences and preferences. The wellbeing measure was developed in response to the lack of culturally appropriate and relevant health-related quality-of-life instruments informed by Aboriginal and Torres Strait Islander voices and perspectives.
For Aboriginal and Torres Strait Islander people in the Northern Territory (NT), chronic kidney disease (CKD) is an increasingly common health problem. The high physical and psychosocial symptom burden associated with kidney disease negatively impacts on quality of life and wellbeing of individuals and their community. For those residing in rural and remote locations, the psychosocial implications of kidney disease are compounded. With few dialysis services in remote areas, most Aboriginal and Torres Strait Islander people with CKD are required to relocate, often permanently, to urban areas to access treatment, which is required three times a week. The impact of relocation is profound and often results in social and cultural isolation, loss of independence, role adjustment, a decrease in health service utilisation, disease progression and an increased risk of mortality.
As such, renal patients are an important cohort to understand measures of wellbeing that are valued by Aboriginal and Torres Strait Islander people. Accordingly, the need for a reviewed and adapted PROMs tool in the setting of CKD in the Top End region of the NT is paramount to addressing co-morbid wellbeing concerns and directing quality renal care.
Through collaborative workshops and yarning circles with Aboriginal and Torres Strait Islander co-researchers and patients, the Renal Program at Menzies School of Health Research is piloting and evaluating the WM2A wellbeing tool in the context of renal care in the Top End. Working with service providers, we will identify: the risks, enablers and barriers to implementing the WM2A tool within renal services; if modifications are needed for the local context; and appropriate modes for delivery of the tool. Ultimately, the project intends to inform how NT renal services measure and respond to patient wellbeing to improve the health of Aboriginal and Torres Strait Islander peoples.